We take lots of things in life for granted, all of us do, well most of us. Things like having a car, having a job, having money in the bank, having food on the table, but most of us are aware of the fact that we take these things for granted. There is one thing that I can guarantee that everyone takes for granted, Pooping. Never before I had Faith did I realize what a huge deal pooping is. But it is a huge deal and if its something that you can do, without fail, well that is one more thing I think you should be thankful for.
Faith can’t poop. She hasnt been able to since birth. We’ve given her enemas and laxatives since she was a month old. Her doctors tried manual disimpactions (yep, it’s as awful as it sounds), the strongest laxatives, and enemas every day at home…nothing worked. In Feb 2011 we came to the University of Michigan. Faiths X-ray showed her entire colon and rectum impacted with stool. Her colon was enlarged into something they called mega-colon. Her bladder was the size of a pregnant adult womans, her kidney function was poor, and her blood work was bad. Turns out Faiths colon doesnt have the nerves it needs to move stool through the colon and out of the body. That problem, not being able to poop, has caused a bunch of other things to go wrong in Faiths body.
The immediate solution to this problem, a colostomy. I remember the day Dr. Newman told me this was the only way we could keep Faith healthy. Her colon was going to be outside of her body? She was going to poop into a bag? I dont cry easy, but I burst into tears right in front of Faith. She went in for the surgery the next day.
Things since then, things haven’t gone as planned. Infections, a prolapsed stoma, failure to thrive (meaning she can’t gain weight),and she gets sick. Sick to the point that I get really scared. Everyone asks me if shes going to be okay? I answer yes, someday. I believe that. For now, we have to take this day by day. When people say how is Faith, I have no clue how to answer. She isn’t good. She isn’t doing the things she should be. I have no clue if she’ll be able to start kindergarten in the fall. It’s not an easy question to answer.
What I do know is she is strong. She handles all of this with courage and grace. She worries more about her roommates that are no where near as sick as she is than she worries about herself. She inspires me to be thankful in the face of absolute chaos and a life that is falling apart around me. And, she loves me, to spite the fact that I can’t fix this. To spite the fact that she is in pain everyday, and I can’t make the pain go away. She loves me more because of all of this, which is amazing, because you would think, at 5 you would loose trust when your mom can’t make you feel better.
What’s also amazing is I don’t feel like less of a mom. The hardest part is that I can’t make her feel better or tell her when she’s going to feel better. And I really miss my son, so much that I have to keep that far from my mind, we’re in the hospital and away from him way too much. They deserve a break, they need one, we all do. On our way to the hospital this time Faith says, “Mom, we should be going to the beach, its summer. It’s the 4th of July. We shouldn’t be going to the hospital.” She’s right.
Everyday, I tell someone who I’m working on a blog. Yeah..seems funny, not at all my style…but necessary to update people of Faith status. Well, everyday has turned into months…Some shrink out there would say something like I’m avoiding talking about it because it’s too painful..very true. I’ve realized whats worse is that I am no longer connected with my people because of this…its been two god awful years and Miss. Optomistism has changed. My glass…is empty and I think that the people who loved me before all of this have a very hard time understanding who I’ve become. I am hoping that through this blog I can speak about my little Faith, so every time I see someone I don’t have to run the other way because I don’t want to explain to one more person how scared I am, so you will know where we are. So when I see you I can tell you a story about my mom who called 911 because she thought she saw the Dexter Bear, and not that were headed back to Mott in the morning.
I’m not a writer, I’m a talker…so this will be no literary prize…but a conversation about our life and where we are headed. But mostly, about my faith and her journey from ostomy bags and feeding tubes to tulips and fireflies.